Nothing, not even pain, lasts forever. If we can just keep putting one foot in front of the other, we will eventually get to the end. Let’s join the race in Jinja City for sickle cell. #SickleCellMarathon2020

Raising Hope International Friends (RHIF) in a special way is proud to announce our debut 2020 Jinja SICKLE CELL RUN Slated for 8th March (International women’s day) Sunday at Rugby Grounds (Dams Water) .The Run will kick off at 7:AM from Jinja #Rugby #Grounds/Dams #Water with a 5km to 10KM run. At the same venue, There will be Free Sickle Cell counseling and testing, Free Consultation, Blood donation and referral for Sickle Cell victims. 1) The purpose of this event is to raise funds to develop quality transitional programming focusing on support (Home Care mgt), Advocacy and awareness of sickle cell disease in Uganda which we believe it will make the special group is Sickle Cell warriors and the care takers exhilarated . 2) To promote public awareness of SCD amongst health care professionals regarding the needs and experiences of families living with sickle cell disease.3) To engage individuals and families living with sickle cell disease in planning and implementation of complications preventative strategies required to optimize care.#BreakSickleCellCycleRun2029#SickleCellMarathonjinja

Growing up with sickle cell disease (SCD) may be invisible but often affects an individual’s relationships, access to health services, social and emotional independence and may bring with it the sense of stigma for oneself and family. Adults with SCD and their family may display social delays, isolation, denial or feelings of being different. Stigma is often defined as a mark of shame, disgrace, disease, or abnormality (Goffman, 1963). The goal for adulthood is to overcome this characteristic of being discounted and to achieve self-acceptance and a place in society. That’s why RHIF was established to Advocate and sensitize Ugandans to embrace the cause and accept all those affected with sickle cell . The reason to join the race to fight against sickle cell disease in Uganda.

You are born with sickle cell trait. It is inherited when only one of your parents has passed on the sickle gene, and will never develop into sickle cell disorder. You do not have symptoms from sickle cell trait, so it is a good idea to have a blood test to see if you have sickle cell trait. If you have the trait, the majority of red cells in the blood are normal round shaped cells. Some sickle shaped cells may be present under certain conditions.

Sickle cell trait is found in 1 in 4 West Africans and 1 in 10 Afro-Caribbean’s, and is also found in people who originate from the Mediterranean, Asia and the Middle East. It is less common in white European’s, although with the ever growing diversity of the population this will change.

Most people who have sickle cell trait are healthy. However, anesthetics can cause problems. If you have sickle cell trait Always notify your dentist or doctor before treatment commences to be on the safe side. There is a small chance that you may experience pain at high altitudes (generally above 10,000 feet), including long-haul flying in unpressurised planes and mountain climbing. It is important you say you have sickle cell trait before undertaking such activities as you may need to breathe oxygen. Extreme exercise may also precipitate problems and if you are a professional athlete you should have a training programme that takes account of this.

It’s estimated that 20,000 to 30,000 babies are born annually in Uganda with Sickle cell Disease and sadly 80% of these babies die before their fifth birthday. This is as a result of lack of Early medical Intervention/late diagnosis, lack /less advocacy on Sickle Cell Anemia, Lack of proper care and attention.

The trait is not an illness, but if you are planning to have children, then certain factors have to be considered. If your partner does not have sickle cell trait, then any children you have will not have sickle cell disorder, but they could have the trait (50% chance).

If you and your partner both have the trait, there is a 25% chance that any child conceived may have sickle cell disorder and 50% chance they will have the trait.

What to do next?

If you want to know your sickle cell status you can ask your GP for a blood test.

In some most parts vst a local health centre that can arrange a blood test for you. You may have been screened for sickle cell disease. Screening is offered.

To all newborn babies as part of the newborn bloodspot (heelprick test) when your baby is five days old. The key reason for offering newborn screening for sickle cell disease is because babies with sickle cell disease are vulnerable to serious infections. By identifying babies early in life , they can be prescribed penicillin and be referred for specialist care, so that they stay healthy.

Newborn screening also detects babies who have the trait (also known as a carrier) for sickle cell disease.

To all pregnant women early in pregnancy (ideally by ten weeks) . Antenatal screening identifies parents to be who have the trait (also known as a carrier). If the mother is identified with the trait, the baby’s father is offered a screening test.

The problem today isn’t Sickle Cell Disease , the Issue at hand is the high rate of Trait gene which needs to be addressed. Those with Sickle cell Trait need Counseling sessions and Education about their status

Sickle cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disorder have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle, or crescent, shape.

Hemoglobin is the substance in red blood cells that is responsible for the color of the cell and for carrying oxygen around the body. People with sickle cell disorder are born with the condition, it is not contagious. It can only be inherited from both parents each having passed on the gene for sickle cell. The main symptoms of sickle cell disorder are anemia and episodes of severe pain. The pain occurs when the cells change shape after oxygen has been released. The red blood cells then stick together, causing blockages in the small blood vessels. These painful episodes are referred to as Sickle Cell crisis. They are treated with strong painkillers such as morphine to control the pain.

Symptoms.

These requires a medical diagnosis from a medical practitioner. But a person with sickle cell or a sickler may experience

1. Infections, 2. pain and fatigue as the easy to identify symptoms of sickle cell disease.

However they may also experience:

Pain areas:in the joints.Pain types:can be sudden in the chest.Whole body:dizziness, fatigue, low oxygen in the body, or malaise.Urinary:inability to make concentrated or dilute urine or blood in urine.Also common is theabnormal breakdown of red blood cells, delayed development, inflamed fingers or toes, pallor, shortness of breath, or yellow skin and eyes

People with sickle cell are at risk of complications stroke, acute chest syndrome, blindness, bone damage and priapism (a persistent, painful erection of the penis). Over time people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder. Treatment of sickle cell mostly focuses on preventing and treating complications.

Treatment and Cure.

The only possible cure for the disorder is bone marrow transplant but this is only possible for a limited number of affected individuals who have a suitable donor. A medicine called Hydroxyurea, can significantly reduce the number of painful crises.